and now for something unrelated to allergies...

we went to the denver aquarium. and this is the most bizarre fish i have ever seen. i really though that it was going to start talking to me. and it was HUGE. it was, like, a person fish.

that's all i have today.

we are so home.

so so home. it's 7:42 in the a.m., grayson is still asleep, aislyn is playing in the backyard on this cloudy yummy day, i'm sippin' coffee and lamenting over the stupid photo ticket that was due while we were in denver and is now late... i totally disagree with the ruling of course. i MUST have had a green arrow, you just can't see it...

i have never been so happy to be home. i feel like NOW i am on vacation! is that so weird or what? my house looked different, smelled different, it was so weird to walk through the door! the kids went to bed so so happily last night, to be in their OWN bed! grayson didn't sleep through the night, he woke up out of habit, but not until around 3! and i THINK that if we had been of sound mind, we should have just left him in there and seen if he would fall back asleep. he was just talking to himself, and i, in a very disoriented state of mind, told kenny that i did not know where i was, and would he get go grayson. and kenny, in the same state, obliged. so maybe tonight will be different. he didn't scratch (unless he's doing it now) and kept his hand socks on all night long which we were told to still try and do for awhile. we're hopeful that his itchy waking days will soon be over.

i do intend to write in detail about all of grayson's "diagnoses" and what foods we can try, what we canNOT try and what it means for his new diet! it's actually, right now, a little MORE stressful because i have to read labels like a HAWK. and i have to read other people's labels like a hawk if we go somewhere! which, might be irritating.. so i apologize in advance. :) ha.

i really really can't thank you all enough for keeping up with our journey and praying for us. i feel a million times better than before we left, we both do. and i want to find a way to get the word out about this place. so if you're reading this, and your kid has eczema and a RIDICULOUSLY high IGE (gray's was almost 9,000 i found out) and tests positive to almost any food via blood and/or skin test.. some of them may not be true allergies and may just be cross reactive to other things. however, don't give your kid the food without medical supervision... i'm just sayin'.. and please, shoot me an email or a comment if you want more info on National Jewish.

there's my plug for NJ. maybe they'll send me a check. or as becky and i talked about, a commission for everyone we send there. ;)

off to start my day. at my house. not in denver. :)

all done.

all done.

our time here is done. i really can't believe it. i'm completely exhausted and will write more about all his diagnoses and how much we love this hospital later... but for now, i wanted to share a few pics and give you a list of grayson's new foods.

corn, oats, soy, grapes, apples, white potato, beef, turkey, pork.

how awesome is that? we were given a list of some other foods which we can challenge at home and then a lengthy list of things that he should avoid at all costs. and they gave us a home care plan, and an action plan that goes with him everywhere along with his epipen. it's very detailed and makes me feel so much better about leaving him with people. and i'm sure it makes them feel better too. :)

for father's day, we went to MY favorite restaurant.. :) maggiano's, on 16th street mall. kenny was pleasantly surprised. they had spaghetti for aislyn and rice noodles for grayson and our food was DIVINE. happy late father's day to my amazing husband, thank you for supporting us. love you. (and happy daddy's day to my daddy, i can't wait to celebrate with you when we get home!)



every morning, the "art cart" comes along and the kids get to make crafts.. aislyn made these, one for her, one for grayson.

this.. is our amazing team of doctors. these pictures are so special to me. i posted the one of jen and of dr. fleischer in another post, and i forgot to get one of shannon (another one of our nurses).. this is dr. searing, our main dr, in his fellowship at NJ. and he is awesome. i seriously can't say enough about our team.
this is emily, our other nurse. we basically only had jen or emily. and we LOVE them.
this is the, i believe his title is "attending physician" of the unit, head over the unit, you get the picture. dr. szefler. and he is so great. as you can see, grayson is thrilled to be taking ALL of these pics. ha.
all of these doctors were around ALL the time, completely approachable, and so helpful. they have changed our little boy's life, and ours, for the better. God truly blessed us with finding this place.

this is just funny. its a little display case of dolls in wet wraps. you can see the appeal for a pic...

long drive tomorrow. thank you all for your prayers. we felt every one. thank you so much.

bunless burgers and fries.. here we come.

that's right ladies and gents. we passed potatoes and beef today. i really can't believe it! i wasn't terribly worried about white potato, but his beef numbers were up there, (beef is cross reactive to milk, and we KNOW that is a true allergy) and the docs have been up and down about whether or not to try it for a few days. but we did it. and he did great. he had eaten more than a whole burger patty by the time of his last dose. for the potatoes, we did french fries and he loved them. who wouldn't?

and now, for approximately 16 pictures. :)

i'm really terrible at moving pics around in the order i need them on this particular computer, so i will just tell you what each one is...

we went to a street fair with mike and heidi (one of kenny's childhood bff's) and their son owen, who just turned 1. it rained on us the whole time, but we had umbrellas. and the baby boutiques were so so cute that i didn't care. (i'm a sucker for a good baby boutique.)and now we jump to bacon. we went out for dinner a couple nights ago... it was a small place, with no one hardly in there, and a very nice waitress so we decided to ask if they could make grayson an allergy friendly plate. we asked her how she made the bacon, if he could have corn made in a clean pot with NOTHING around it, and if they had an apple. she complied and brought us out his plate with corn, bacon and two apples neatly sliced. :) NOTE- we don't plan on making this a habit...eating out with him that is.. there is the fear of cross contamination and someone not being careful in the kitchen...so for the most part we will continue to take his food with us, which is fine. we're used to it.

back to the fair...

and back to the bacon... we could not get grayson, at first, to eat the corn. all he wanted was bacon. finally he decided that he would eat the corn as long as he could use the bacon for a spoon. weirdo.



this next one is AWESOME. GRAYSON IS EATING POPCORN!!! they had kettle corn at the fair, and the man told me that it was just soybean oil, corn, sugar and salt! and oh my word did he LOVE it! it was so fun to watch him eat a treat with everyone!
grayson has discovered that when not wearing socks in the car, it is fun to eat his toe.
and we're back to the popcorn.
sweet little owen at the fair...



not sure what all the leg extending is about.


grayson is doing really good. he is flaring a bit on his feet and the bottom of his legs. i have let him wear shorts for two days (giant sigh) and that could be why. so we wetwrapped his legs tonight and hopefully they will look better tomorrow. our discharge meeting is at one tomorrow, i really can't believe this has come to an end. it has FLOWN by. i think everyone is ready to come home. the kids' schedules are so messed up and aislyn is a bit crabby because of it. pray that tomorrow i will remember EVERYTHING that i want to ask the docs while i have them all in the same room.

i can't begin to tell you how much better we feel about all of this. our son can eat food. God has been so gracious to lead us to this particular hospital with these docs to really nail down what are his issues and what aren't his issues. we understand it all so much better now! and met amazing people in the process! not sure what we will challenge tomorrow, we're gonna talk about it in the morning.

off to bed now. thanks for checkin in...

plea for prayer for blake

becky and blake got home this evening after an exhausting couple of weeks, and blake had an anaphylactic attack to something but they are not sure what it was. becky and ryan had to epi pen him, and then he was taken to their hospital to be monitored overnight. he's doing fine now, but this is just a WHOLE lot for them to deal with. i can't imagine if one of the kids fell down and scraped their knee right now because of how tired i am after this trip, much LESS if one of them had anaphylaxis. please keep becky and ryan in your prayers, that they would be able to put a finger on exactly what it was that triggered his attack. and pray for blake, that he would quickly recover, and that they would all be able to rest this week.

we sure love our jen...

jen is grayson's nurse, the one we had almost the whole time. and she was amazing. so good with grayson and just REALLY good at what she does. she doesn't work on mondays or tuesdays, so we had to bid farewell to her on friday, since g's last day is tuesday. i can't believe it's almost over! these couple weeks have gone by fast...

all about blake...

i wanted to post, for my sweet sweet kindred spirit and now close friend becky, a couple of her precious little brave boy. they came over friday night for a jaunt in the fountain... grayson's first experience IN a fountain, with a diaper and a tshirt on. maybe a little white trash, but we didn't care. and he CERTAINLY didn't care. i will post the ones of grayson later, but i wanted to post these of blake now. congrats blake on your SUPER big new diet!! and thanks becky, for being my sanity. i really just really am so glad you were here at the same time we were. i mean, what are the odds.. divine intervention i tell ya....

happiest he's ever been.

kenny and i both agree. we've never seen the kid smile and laugh so much. it's so refreshing. just wanted to share some of the happiness...

i am so not a doctor.

and that's ok.

today was soy.  and it was looooong.  this was one that the docs wanted to be super careful with soy because of his numbers, so they took it slow.  it was about six doses every 30 minutes, which he took like a champ, but it meant he couldn't nap until about 1:00 after his last dose.  he got a couple hives right at first, but we determined they were from the bath he had after his first dose, and they got smaller and smaller throughout the day.  but then after his nap (which was 30 minutes because it was loud- there were aLOT of boys in the unit today), he was super red eyed and scratchy and coughing.  but he was EXHAUSTED, totally worked up and having a meltdown, so we had to wait two hours and try it again.  after THAT large serving of soymilk, he was fine, and has been ever since..soooooo

it's a pass.  :)  GIANT SMILEY FACE.  this means elecare can be backed off on.  not gone altogether yet, depending on how mon and tues go, but we will meet with the nutritionist again on tuesday to determine that.  

one of our doctors could tell that i was so hesitant about calling it a pass, but in retrospect, it really was.  he kept saying "DO NOT BE AFRAID to give it to him."  once again, i have to trust!  

have i mentioned that i love this place?

we had the option to come in tomorrow (saturday) for a challenge, but grayson needs a break.  bad.  mommy needs a break bad too.  i really really have not ever been so worn out.  ever.  not even after 30 hours of labor actually.  i think i'm even more tired than that.  

kenny comes back tomorrow morning, first thing, and we could NOT be more excited about it.  courtney, her mom and the girls leave in the morning. :(  she has been a huge help this week, thanks girl.

so guess what grayson did this evening.  you'll never guess what i LET him do this evening.  he PLAYED in the FOUNTAIN with his ...  get this....  SOCKS AND PANTS OFF.  can you believe it?  just runnin' around in water with a diaper and tshirt on!  he was so unsure for awhile, blake kept trying to get him to get IN the fountain, and he would politely say "no" and just walk circles around it, for probably half an hour or more.  once he got in he was just screaming "MOMMY!  WATER!  MOMMY!  WATER!"  he was in heaven. and it was cold.  but he loved every second of it.  inside i was freaking out a bit, but the thing is , i knew what to do.  i soaked him,  i wet wrapped his legs up to his knees and then put him to bed.  and it should be ok.  it's so nice to know what to do.  

i love this place.  but i will be SO sad that becky and blake are not there on monday.  blake had a great trip and passed a lot of foods.  i think he's up to 30ish now, which is so encouraging.  

all done for now.  ya'll with the comments... thank you so much for leaving them. i LOVE to read them, they are all just brilliant and encouraging and funny and just thanks.  :) 

4 kids in a small apartment

this is what courtney and i's nights are like. every. night. my kids are in the same room and so are her girls and they pretty much just scream and cry for thirty minutes each evening when we put them down. all three girls are screaming and grayson is just screaming because they are. it's so fun. and i have never been this tired, which makes it even more fun. i think courtney would agree with me on that one. i told her that i wanted to scream a cussword tonight. she encouraged me to go for it, but then we decided it would not be in the children's best interests.

cutest video ever...

ok MAYBE i'm biased.

we are five for five. with three incompletes. :) today we got pork and oats. oats was a reeeeeeaaaaalllllly long one. he started out with the tiniest eensiest bits of oatmeal ever and i literally had to hold him down, arms behind his back, force it in his mouth, squirt some water in there, and shove his paci in. all the while, he was screamin'. it was kinda sad. by the THIRD dose, the nurse decided that we would mix it with sweet potatoes and boy that totally worked. he ate all his doses and then some... his face turned red and he developed a little patch on his chin, but THANKS to our amazing docs and nurses, they determined that it was not from the oatmeal, but rather from other things going on. THIS, people, is why i can't do this alone, especially with the biggies like oats. oats means oatmeal, and COOKIES!! we are going to try and get cocoa because i can totally bake stuff with that! and cocoa is typically a low allergen, if i understand correctly.

so, i'm putting this in here so that i can remember it for comparison's sake later. grayson's IGE level is 5,000. normal is below 30 i think. it was 1,200 a year ago, and has gone up significantly. this number can be very high in kids with eczema because of all their open wounds. this number being elevated can certainly elevate his individual food IGE's which determines what class of allergy it is. for instance there is class 1 through 6, 6 being the worst. grayson's tests are typically between class 3 and 6. but as we know, you can't trust every skin prick and every blood test. those are just helpful in determining whether or not to challenge the food. which is why we have decided to not challenge wheat, milk, any nuts, egg and any other grain, because they were all super high still. but i really do think there are several things he'll grow out of. blake is already growing out of some that he was super allergic to a year ago. anyhoo, random.

and now for a couple pics. fritos. he LOVES them. this was his final dose. and he ate every one of them!look at those TOES! this was the first day that grayson hasn't worn socks. ever. ever. i told blake yesterday that grayson would come today not wearing socks and they could wear their matching shoes. well, grayson insisted on wearing socks. when we got there, blake said "um, grayson has socks on." so i gave it a whirl, and got him to take his socks off. so we got a pic of their little naked spidey feet. tomorrow could be huge. it's soy. and it will be all day long probably. if we get soy, we can get RID of elecare. eventually. which would be so wow. he could have soy cheese, and lots of other interesting soy things. i'm fairly convinced you can make anything out of soy. anyways, so pray for that. i'm going to bed. and i don't know why this text is underlined. and i don't care. good night.

success...

well, we had a good day.  today, we got TWO new foods.  corn, which is huge, and turkey!  isn't that awesome!?  the docs wanted to try  the foods that they figured he would maybe do ok with first, and we have been 4 for 4!  FOUR NEW FOODS!  and no more vaseline.  that right there has made this trip worth it.  i'm off to bed, but wanted to share that, and a few pics....

becky has become grayson's other mommy this week.  and i am ok with that.  she is such a blessing, SUCH a blessing and has helped me with him so much.  she's way better at this stuff, and has been doing it longer and her advice is always right on the money.  grayson just adores her and blake and they are the reason i can actually get him to the hospital fairly happy each day. :)  i will be soooo sad when they leave at the end of this week.  blake has done phenomenal with his food challenges, and he is truly just a picture of hope for me! aislyn thinks he's pretty cool too...  don't get jealous liam. ha ;) 
blake likes to steal his doctors instruments, nametags, shoes..... and grayson just likes to be in pictures.
some foundation provides computers with games for the kids hangin at the hospital, pretty cool...

this is dr. fleischer, who we love.  but we actually have loved ALL of our docs at this place...  he gave him this banana which grayson pretended to be excited about.
the apple....
i know.  ouch.  this was his food skin prick test.  there were 32 things on his back...

um, this is grayson tip toeing across the floor in an attempt to not anger our downstairs neighbor, which is a whole 'nother story.  the problem is that when you teach 2 year olds to tip toe, they tip stomp.  but they think it's tip toeing.  anyhoo, on to a different subject. 

 this is my skinny naked white boy with striped socks on.  oh the whiteness.  i think this is his first pic ever just in a onesie. ha.  
grayson's eczema still looks amazing.  we are just thrilled with our new knowledge, and God's healing on our boy.  he just looks happier when he's not scratching ALL the time!  

tonight we got to go to my bff's (rachael in denver) son quincy's second birthday party.  he and grayson are just two weeks apart.  it was so nice to get out and see familiar faces (her parents were also there).  

i don't think i've ever been this exhausted in my life.  mentally and physically.  this is so worth it, but man, i am one tired girl.  good thing there are starbucks everywhere, but i really would like to find a drive thru one...  

tomorrow is oats and pork.  pray that he will be in the mood.  hopefully we can get a third food in....  friday is HUGE.  it's soy day.  we really want that one.  it COULD mean no more elecare!  but it could definitely go either way....

thanks again for the prayers.  and a shout out to my amazing sister in law courtney who likes to be an organizing cleaning fairy while i'm gone for the day.  it's so nice to come home to picked upness...  cuz i certainly haven't been doing it!  thanks girl.  i so could not do this on my own...that's fo' sho'.

food challenges with a 2 year old

are just really really not fun.

however, guess what we passed first thing this morning? GRAPES. he loved 'em. and it was the ONLY thing he would love. all. day. long.

we tried a banana. he asked for a fork. put the banana on the fork. licked it. put it down. and went to play with cars. i tried that for awhile to no avail.

we tried pears. we tried cubed pears. sliced pears. pears cut so small that they looked like rice and put them IN rice pears. and he spit. out. every. one.

we tried strawberries. he picked them out himself. he put one on the end of straw. he thought it was super cool. he then shoved it in MY mouth.

we tried a bell pepper. we cut it up to look like sweet potato fries. he was not amused. "i want rice" was his chant. all day long. more rice. more rice.

poor becky, who is REALLY good at food challenges, was even stumped by this kid. she had so many tricks up her sleeve that i just KNEW would work. but they did not.

by 3:30 i was done, he clearly was not going to try one single new food put in front of him. so we called it a day. i went to a grocery store and bought different varieties of some of these foods so that maybe we can trial them tomorrow. we are doing fritos tomorrow for the corn challenge. that should be interesting. i'm hoping to do soy and oat at some point this week. i told the dr. that i was NOT above squishing the food, putting it in a medicine syringe, holding him down and shooting it into the back of his mouth. i'm really really not.

we did his environmental back prick test as well today, 28 more pricks. 4 less than the ones he had yesterday. he is allergic to cats, dogs, grass and trees. several different types of grass and trees. i figured as much. that was no surprise to me, as his seasonal allergies have been killing him the last couple days. and i can't give him anything at all for it because it interferes with the food challenges. he has been rubbing his eyes and nose, which now i recognize as environmental allergies. he hasn't gone for his hands or legs or ankles ONCE in a few days now. he actually wore a short sleeve shirt for HOURS today without scratching his arms! and people, he is the whitest boy i have ever seen. i mean, get that boy some sun. now that the redness is gone, it's blinding. holy white boy batman.

we also drew blood today. from both of his tiny white arms. he was not a fan. i was not a fan either after watching it squirt everywhere after they pulled the needle out. i could never be a nurse. they did RAST testing to compare it with the skin prick test to see whether or not we will even try to do some of the really bad reactive allergens, such as wheat, milk, beef and several others actually.

our reinforcements arrived safely this evening, courtney, braidyn and mali. and martha (courtney's mom) of course, but she is here on work and staying across town. courtney will watch aislyn during the day while we are at the hospital which is a huge load off. another friend of mine, heidi, watched aislyn today while we were at the hospital. and aislyn had soooooooo much fun. she came back with her nails painted, and diamonds all over them, thanks to her care package from liam. heidi has a one year old boy, but she's one of those girls that would be a GREAT girl mom... so i'm guessing she may have had fun too. ;)

that's all for the day. we got grapes. so all in all, a good day. please please please pray for grayson, that he would eat his food challenges. i'm very frustrated at this point. if he were one, he would try anything, if he were three, i could bargain and at least try to reason. but he's two. and barely two. and he is stubborn. i don't know where he gets that from.

pictures soon. i promise. it just took an hour to get the kids asleep and i have no energy to pull out the camera... but i have lots of fun ones to post soon.

skin prick tests

i forgot to mention these. i will post a pic tomorrow because kenny is taking his computer back to abq tonight. he was tested for 32 things MOST of which he reacted to. those he didn't were turkey, corn, carrots, squash and one other thing that escapes me at the moment... but we will start trialing those soon! anyhoo, there is hope..

need i say more...?

dr. fleischer took this today and emailed it to us! i LOVE this place. the dr was so anxious to start food trialing that he just handed him an apple right there in his office! of course, i was like "i don't have my camera!" so he pulled out his phone. i love this place..

apples are a GO people. i could cry. and i did. tomorrow is the rest of the fruits. :)

some pics and an explanation

so my friend amy asked if i could explain how they have him itch free on no meds. isn't it crazy? and amazing? it all has to do with the itch scratch cycle, i think. becky if you read this, feel free to clarify in the comments.. i know you deal with this with blake. i guess its fairly simple though. and it has everything to do with the wet wraps and with the ointments and creams we are using on him. he is in the bath three times a day, 20 minutes each bath and until yesterday, he was doing 2 hour wet wraps after each of them, and then he sleeps in the final wet wrap. so his skin is wet. all the time. so it has time to heal. once it heals, there is no need to scratch, unless he comes in contact with an allergen of sorts which could cause some itching, but we are keeping him away from everything as we always have. since he can't be on meds to do the skin tests, he had to stop them on tuesday. he used a sedation medicine (a small amount) the first and second night to help him sleep and so they could monitor him at the hospital, and i have not used it once since then. i haven't had to. he still will grab at his feet or hands, and i'll think he's gonna scratch, but he'll just feel them. it's funny. anyways, that might be a bad explanation but it's just pretty cool. basically if you stay on top using the preventive measures they are teaching us, the need for meds decreases significantly. for instance, if we find out that there are a ton of environmental factors, which i am suspecting, we will obviously have to use something at times.

and now for some random pics...

this is grayson and blake.. blake is trialing STRAWBERRIES which PASSED!!! and later that day, he passed wheat.. congrats little man!!
these are my new friends becky and cara... and the room we hang in.
who says you can't play basketball in a wet wrap?
this is becky (blake's mom) and xavier, who is 3. he is a doll. they are both BRIGHT red headed dolls....
blake and grayson playin' with trains.

that's all for now :) tomorrow is skin prick test day!!